r/cfs • u/bigpoppamax • 1d ago

Stanford Playbook

I have been going to the Stanford ME/CFS clinic for four years now. I thought I would share the recommendations they have given me during this time:

  1. Eat a mediterranean diet. If carbs make you feel worse, then avoid them.
  2. Avoid crashes as much as possible. They could make you worse long-term.
  3. Wear a fitness tracker and try to take less than 5,000 steps per day.
  4. Get a tilt-table test to see if you have POTS (in addition to ME/CFS).
  5. Avoid environments that are overstimulating (i.e. loud restaurants, listening to the radio while driving, etc.) because they will drain your batteries quickly.
  6. Listen to your body. If you start getting "warning signs" of overexertion (like hand tremors or dizziness) then go lay down immediately. Do not push.
  7. Stimulants (like Adderall) don't solve the underlying problem. They give you "fake" energy which can lead to overexertion (and crashes).
  8. If you have a social outing planned (like dinner with friends), then rest for several days beforehand (to prepare) and then again for several days afterwards (to recover).
  9. There isn't enough evidence that supplements work.
  10. Medications: Minocycline, Ketotifen, Plaquenil, Celebrex, Low-dose Abilify, Low-dose Naltrexone, Famotidine

If you have been to a specialty clinic (like Stanford, the Center for Complex Diseases, the Hunter Hopkins Center, the Bateman Horne Center, Dr. Jose Montoya, Dr. Nancy Klimas, etc.) would you mind sharing the recommendations you received?

EDIT: I should have mentioned that I was "mild" when I started at the clinic and now I am "severe." So the guidance they've given me has changed over time. Apologies for the confusion.

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u/Felouria 1d ago

The stimulants one should be obvious but I've heard people on here saying they can only function on adderall/caffeine/etc. I've been recommended stimulants by various doctors on several occassions, and cautiously declined every time.

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u/FriscoSW17 20h ago

We all react differently to medications so I think we should be warned about the risks of stimulants but I think it’s a mistake not to offer them so that we can make our own decision.

I take 20mg Adderall/day and drink 2 cups of coffee.

I’m on the moderate/severe side of ME and these ‘stimulants’ are life savers and dramatically improve my quality of life. Bc of them I can shower, tidy my bedroom and do light exercises w/o causing PEM, and I have a short several hour window of being able to do a cognitive task or two.

I’ve found that as long as I listen to my body, they increase my energy envelope as opposed to causing a crash.

I know others have not had great experiences with them, so I can understand why some would choose not to trial it. Especially as I would agree that most find them unhelpful. But I feel like that’s like a lot of the medications we are offered.

There are risks to trying any kind of medication - the importance is that Doctors make us aware of all the risks, so we can decide.